A critical examination of access to young onset dementia diagnostic and support services
| dc.contributor.author | Novek, Sheila | |
| dc.contributor.examiningcommittee | Thompson, Genevieve (Nursing) | en_US |
| dc.contributor.examiningcommittee | Shooshtari, Shahin (Community Health Sciences) | en_US |
| dc.contributor.examiningcommittee | Phinney, Alison (University of British Columbia) | en_US |
| dc.contributor.supervisor | Menec, Verena (Community Health Sciences) | en_US |
| dc.date.accessioned | 2021-04-05T18:55:47Z | |
| dc.date.available | 2021-04-05T18:55:47Z | |
| dc.date.copyright | 2021-03-05 | |
| dc.date.issued | 2021-03 | en_US |
| dc.date.submitted | 2021-03-05T17:10:31Z | en_US |
| dc.degree.discipline | Community Health Sciences | en_US |
| dc.degree.level | Doctor of Philosophy (Ph.D.) | en_US |
| dc.description.abstract | People living with young onset dementia and their families have high needs for support, but experience difficulties accessing services. This dissertation critically examines access to diagnostic and support services for people with young onset dementia drawing on in-depth interviews with those living with the condition, family members and providers. In addition, this research aims to advance understanding of inclusive approaches to dementia research through a review of the literature on safe research practices and reflections on the research process. To develop a framework for including participants with young onset dementia, the first study in this dissertation critically reviewed approaches to promote the participation of people with dementia in qualitative research. This review identified a range of issues that impact safety such as: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. In addition to contributing to the literature on inclusive methods, findings from this review informed the design of the ensuing qualitative study involving participants with young onset dementia. Next, I conducted an empirical, qualitative inquiry into access to diagnostic and support services for people with young onset dementia in Winnipeg, Manitoba. In-depth, semi-structured interviews were conducted with six people living with young onset dementia, 14 family members and 16 health and service providers. Findings were analyzed using inductive thematic analysis and using the candidacy framework as a conceptual lens. Participants’ accounts revealed complex barriers that constrained access to services and generated ongoing challenges for families. Age restrictions and eligibility criteria geared towards older adults systematically excluded younger individuals with dementia, creating barriers to care. Developing dementia at an early age also affected how participants identified with services and how they, in turn, were perceived by providers. Access was further constrained by contextual factors such as fragmentation, resource limitations and the underrepresentation of young onset and rare dementias. Together, these findings highlight the need for coordinated, family-centred services alongside the broader representation of young onset and rare dementias in research, policy and practice. | en_US |
| dc.description.note | May 2021 | en_US |
| dc.identifier.uri | http://hdl.handle.net/1993/35395 | |
| dc.language.iso | eng | en_US |
| dc.rights | open access | en_US |
| dc.subject | Dementia | en_US |
| dc.subject | Diagnosis | en_US |
| dc.subject | Qualitative | en_US |
| dc.subject | Access | en_US |
| dc.subject | Candidacy framework | en_US |
| dc.title | A critical examination of access to young onset dementia diagnostic and support services | en_US |
| dc.type | doctoral thesis | en_US |
| local.subject.manitoba | yes | en_US |